RE: Hoping for some help?

January 13, 2004

Hello Marie

My son at age 3 1/2 was very much like yours. Yes, I would look at apraxia

more closely!! was nonverbal at that age with only maaa for me &

everyone else, ii for hi & ii ii for night night. He would point and

gesture for his needs. He too would take my hand & try to get me to point

to what he needed if he couldn't get his point made. You mention trying

different vitamins, have you given essential fatty acids a try mainly a

product like Pro EFA that so many of us here find helpful?? When we started

on them at just over 3 1/2 it was as if in 3 1/2 weeks someone turned

the light switch on. He began to try to make new sounds which eventually

led to new word approximations to putting two word approximations together

to present at age 5 1/2 talking in 5-6 word sentences. He is still delayed

but most don't notice a problem. He also was very clumsy walked a little

late 15 months. He fell once and had to get stitches just under his eye &

by 2 or so had knocked out a front tooth. Now he is not as clumsy,

thankgoodness!! Those ER visits get costly!! Go out and purchase the book

The Late Talker, it is co written by

January 13, 2004

Hi Marie ans Dylan,

There are overlaps between autism and apraxia in some instances, for

example both typically involve some amount of sensory integration

dysfunction -so it's best to have your child diagnosed by

professionals that are experienced in working with 'both' apraxic

and autistic children so that you have better odds or getting an

appropriate diagnosis. Also there are a number of parents in this

group who have one child with autism (or PDD) and one with apraxia -

and they can tell you the difference too. Then again -there are

those children who have both autism/PDD and apraxia (or some other

speech and/or language impairment)

For autism therapy -traditionally it's lacking in the intensive

appropriate speech and occupational therapies required by most

apraxic children. In addition -ABA therapy which is wonderful for

some autistic children -may actually be detrimental to an apraxic

child. There is a difference between a child that won't talk and

one that can't talk -but desperately wants to. So more important

than diagnosis in many cases is what therapy approaches are being

used ...and are they working?

Because due to frustrations some children with severe speech

impairments can either lash out or withdraw -it's at times best to

assess suspected diagnosis from these behaviors while providing the child with

alternative means of

communication which help relieve frustration. I know you said your child picked

up on PECS right

away -which tells me he is thrilled to be able to communicate. I

would also explore " simple " sign language as well. The clumsiness

could be from a number of things. Could be motor planning -or

weakness...or even too much Vitamin B6 as I posted the other day as

one of the side effects listed by the NIH which apparently is used

by many parents of autistic children. Is your child on high dosages

of this vitamin since you say you are giving him the " vitamins and

such " ?

" Too much vitamin B6 can result in nerve damage to the arms and legs "

http://www.cc.nih.gov/ccc/supplements/vitb6.html#risk

Questions:

Does your child play appropriately with toys?

If everyone is pointing to a dog or a plane will your child look?

Big question -are you supplementing him with any EFAs and if so what

dosage and formula? (and brand)

Multisensory approaches including traditional (ST and OT) together

with alternative have proven to be successful in just about all the

children in this group so there is much hope...Actually -I still have a houseful

of

company here -so I'm going to post an archive message below for you

that may help more..and I know others will reach out to help you as

well! Best to you! ~

From: " kiddietalk " <kiddietalk@...>

Date: Mon Jan 5, 2004 11:59 pm

Subject: Re: Diagnosis made - need support

Hi ,

Take a deep breath ...a hot bath...then put on some comfy PJs -drink

some hot chocolate and then get some sleep. It's OK to cry, it's OK

to ignore the diagnosis and laugh. No matter what your son is still

your " sweet, beautiful son " -and he is very lucky he has you for his

mommy. I can tell that you are the type that searches and will do

everything to give him the best chance possible!

You don't have to accept one diagnosis as fact just yet even if you

in your heart believe it to be true. You can seek a second

opinion. Also you can focus on things your child loves to do and is

good at which will make both you and him feel better. You can find

others to get together with in your area for local support (where

are you?)

Not all that have an apraxic/communication impaired child have any

hard signs that will show on an EEG or MRI -and there is no way of

knowing yet the difference between what used to be called

developmental apraxia of speech and just calling it apraxia of

speech -there is a bit of confusion right now even among the MDs -

and I'm sure down the road it will be figured out. I know in

speaking with Nolan Altman MD of Children's Hospital of Miami -the

tests they have today just keep getting better and better to show

incredible details of the brain. Dr. Altman is the MD behind the

study on right brain dominance in late talker children

http://news.bbc.co.uk/1/hi/health/3233762.stm and expressed interest

to me, Dr. Jackie Stordy, and Dr. Marilyn Agin last we were all

together. (only problem is if we do this in Florida -we need a

group of children with apraxia in Florida who have not ever been

supplemented with EFAs....and even finding a group here isn't easy

no less never supplemented with EFAs! Maybe Dr. Nolan can fly into

NJ?)

There is much hope that we will have answers on more ways to help

our children going ahead...and again I just know that EFAs will be a

large part of the answer.

For now -we do post here many success stories for children who

receive early and intensive appropriate speech and multisensory

therapies (and EFAs)

So after all this about EFAs and speech -funny enough I did a quick

search on " immature EEG " and found: 'No differences in EEG scores

or Fagan scores were found, but neonates with mature EEG (N = 70)

had a higher concentration of DHA in umbilical plasma phospholipids

than neonates with immature EEG (N = 51) on the second day of life. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=1\

1694666 & dopt=Abstract

The conclusion " This study shows neither harmful nor beneficial

effects of maternal supplementation of long-chain n-3 PUFAs

regarding pregnancy outcome, cognitive development, or growth, as

compared with supplementation with n-6 fatty acids. However, it

confirms that DHA concentration may be related to gestational length

and cerebral maturation of the newborn. "

(again when will they learn they can do a study and actually mix the

two together -then get back to us when you get those findings which

we already know what they will be!)

And for the MRI. One of the parents of a patient of pediatric

neurologist's Xue

Ming

MD PhD out of UMDNJ posted here about her daughter's delayed myelin

which showed on an MRI which improved remarkably once on ProEFA.

What was

interesting is that Dr. Ming said

that even those unlike her daughter who have instead subtle delayed

myelin that

doesn't show up on the

MRI -they are finding at UMDNJ that in children with autism and

apraxia most have this subtle delayed myelin showing up in the lab.

Dr. Ming is

one of the MDs I spoke to when I was asked to do a presentation for

the neurodevelopemental department at UMDNJ after I posted my theory

(that ended up being right) about myelin and EFAs here.

Even in cases where the diagnosis is severe -there is always great

hope. I can

tell you that for a fact.

=====

January 13, 2004

Sorry Marie and Dylan -I posted the wrong archive for you!

From: " kiddietalk " <kiddietalk@...>

Date: Mon Jan 5, 2004 9:38 pm

Subject: Re: I need input.... at what age did you go to a dev.

pediatrician?

Hi le!

I for one so agree with you as you know. Also I know the only

downside of Early Intervention is missing it -and by not seeing a

neurodevelopmental MD -you may not be aware of all that can benefit

from early therapy. If your child ends up just starting to talk and

is fine -

there are no labels -there is only a talking child that everyone

wonders " was he just a late talker that would have talked anyway? "

Starting therapy and getting labels for a school age child

however, and wishing you knew about EI sooner...that's another story.

Here is an archived message on more (and le -let Nas the new

parent know about the preschool you are looking into -it sounded

great!):

" What type of apraxic like speech behaviors are you seeing that

makes you and the SLP suspect your child has apraxia vs. a simple

delay in speech? Is your child talking at all yet? At your child's

age -without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab.org/information/speechlanguage/oralapraxia.html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " The book is available

either online or ask for it through your favorite bookstore or

library.

http://www.speech-express.com/late.talker.html (OK so I'm one of the

co-authors -but it's hard not to recommend this book when so many of

the

questions asked are in here!)

You are not alone and we are all here for you. We wish you the best

in your

journey! "

=====

January 13, 2004

I have 3 1/2 year old twin boys - one without a doubt on the

spectrum and one severely apraxic who is most probably not on the

spectrum (long story). You can e-mail me off list if you want to

compare and contrast!

-

January 13, 2004

Robin,

Can you please share with the list the difference. I, for one, am